Though nondescript, that phrase is a loaded one. It is Chris-speak for, “Your Dexcom is making an alarm of some kind; you need to take a look at it.” And now that the Dexcom SHARE application is feeding my glucose results to my husband and a few other authorized viewers, when the thing goes off, other things go off and people are notified.

I’ve been using the Share for a few weeks, and have had some time to give it a good once-over. My take on the SHARE 2 application itself:

Overall, my data transmits pretty seamlessly from the receiver to the phone, but there have been weird times when the data just stops. (When I’m on a plane, this makes sense. When I’m at my kitchen table, it does not.)

Essentially, that means I am poking this fine little fella in the face several times a week, to help jump start whatever is borked in transmission. If he were less cute, I wouldn’t feel so bad about jamming my index finger into his jaw.

It feels weird to have to put my password into the app in order to access the “followers” screen. Why protect that specific screen, but not the others?

I thought having the option to only add five followers would feel limiting, but in fact, the ability to share my CGM data has not made me want to broadcast my stuff to the world. Five followers is fine so far; right now, I have my husband, a close friend, a doctor-who-is-not-my-doctor-but-we-are-trying-something-out-for-the-sake-of-SCIENCE, and myself. And yes, I have added myself because I wanted to be able to access my data alongside the data of those who I am following when I go into the Follow app.

(Does any of that make sense? Let me know if it does not.)

Also, iOS only? Frustrating because anyone who is not using an iOS device can’t be added to my network.

The alarms that are issued through the phone are wicked loud, and very useful. I recommended that Chris keep my high alarms off and only receive notifications for hypoglycemia, which is working out reasonably well. (Especially when I am traveling, and can respond to his, “Eat something,” texts with a quick, “Already did.”)

The application doesn’t seem to eat up my battery life on my phone or on my receiver, which I appreciate. I feel like the Share receiver holds battery life better than my previous receiver. I charge it once a week and even then, it’s not drained.

I forget that the application is on and working because 85% of the time, it’s on and working. I rarely switch it off because it doesn’t impact my battery life (or actual life) much to keep it on. Except when it becomes emotionally charged, which is a whole different point and one I tackle a bit further down.

Using the receiver that’s Bluetooth enabled versus the dock you had to plug into the wall is obviously an upgrade, and contributes to ease of use. Also, it’s easier to pack. And harder to forget.

And my take on sharing, in general, with this application:

Sharing data is personal. Wicked personal. And it’s a choice, one I’m grateful I can make. Again, I can’t rework my islet cells, but I can decide what devices and treatments I use to manage this disease.

And sharing makes me feel a little ashamed, at times. I can reason as to why it should NOT, but it’s a reasoning I find difficult to follow through on. Keeping my blood sugar data devoid of emotional valuation is difficult for me. I was raised on “good” and “bad” blood sugars, not “in range” and “out of range,” and seeing a graph that pings and pongs all over the place makes me feel weird emotionally as well as physically.

For example, two weeks ago I had a urinary tract infection (much like this epic one). It was nasty, and both the infection and the antibiotics for it sent my blood sugars into the stratosphere. This glucose saturation was sent up to the cloud and pinged out to the people I trust. None of them knew I had an infection, but I felt the need to say something about said infection so they’d understand why my numbers had gone bananas. I felt good about having people I trusted so much that I knew they wouldn’t judge me, but at the exact same time, I felt the need to explain myself. My knee jerk response of justification kind of flies in the face of the security and trust. And it’s not because of them or how they judge me, but because of me and how I judge me.

Same goes for the following week, when I was on another medication (everything is fine, by the way – just a flurry of things all at once) that caused wicked blood sugar spikes. We’re talking HIGH with arrows still pointing up. I took a bolus that put every other bolus I’ve ever taken to shame. And after a few hours, I mentioned this medication to those with access to my data because I felt the need to explain the numbers.

Which opens up my “what the fuck” mental folder, where emotional responses to diabetes end up filed. On the one hand, I really like having a loved one or two able to see my data because that their access offers up a safety net I’m very grateful for (and have written aboutseveral times). Also on that hand is the accountability that works to my benefit. As I told my friend who has access to my CGM data, the commiseration angle is empowering because it makes me want to rein things in faster than if I was the only one looking. Blood sugars on display are ones I watch more carefully, for whatever reason.

But on the other hand is my desire to turn off the data sharing because I want to let my blood sugars stutter and splutter without scrutiny. I want to fail, or do what I perceive as failing, in private. Sometimes I want to leave the Sharing option on only throughout the nighttime hours, or exclusively when I’m traveling, so I can keep a foothold on my dignity. Not that my numbers are shit all the time, but the past two weeks have been tough even for me to see, and I’m familiar with my own bounce. (And there I go again, explaining away the things that make me feel ashamed. This is part of the fuckery, because my management does not come easily to me, and I try every single day to work these blood sugars out. I test and exercise and track and eat well and truly make effortsand yet blood sugars bounce. I can blame diabetes, but since the due diligence list is so long, there’s always something I can look at and blame myself for. Which is a fun dance.)

Have I mentioned that sharing data is personal? Let’s go back to that for a second, because it is. And the level of sharing that works for me on days when my blood sugar is 94 mg/dL and holding steady is very different than when I’m riding out a 287 mg/dL for three hours.

I’ve made no secret of the fact that I appreciate options, and the option to Share is one I’m happy to have. Coming full circle, I can choose to share or not share. I can also turn off accessibility to others with the click of a button. Honestly, I am grateful that I have a network of people I trust with this kind of personal data because it’s some soul-baring kind of shit. And as an adult, I can decide how these data are dealt with because they are mine.

Maybe, with time, I’ll stop viewing these data as little dots of validation and instead as information to help me live better.

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23 Comments

Fantastic post, as usual. This makes me think a bit about when my son (12yo) will start transitioning to us as parents helping out with blood sugars to being observers, and darned nosey ones at that. We do remotely view his numbers currently, but that is primarily used when he is at school or at night. An interesting dichotomy is created when a technology can give me as a parent a more peaceful feeling while at the same time could give my son a feeling of being intruded on.

Thanks for sharing your experiences, doubts and feelings. I am not sure whom – besides my wife – I’d allow to follow.
As we have to wait for G5 over here (the share receiver will not be available here in Europe), I still have some time thinking about it.

I rarely comment on your posts, but this is one of those times that I feel the need to scream “YES, I have sort of similar experiences and I value your posts because I feel not so alone in what is going on in this crazy diabetes.” As I read the links that are attached, I find many strikingly similar situations and while we’ve never met, I feel this strange connection and I thank you for all that you do! This is perhaps one of my favorite parts of my daily routine, and I just want to take the time to say thank you and keep going, as your words are aspirational to do the same. I also want to keep writing, so that one day, I might be able to have the same impact that you’ve had on me.

As of now I am a “follower” but not a “sharer” in that my friend (hey Julia!) has the Share2 and and I’ve yet to upgrade. Perhaps it’s a little different in that we both have diabetes, but I find that I stalk her diabetes waaaay less than people would think. Yes, the app is running on my phone and I have hypo alerts set, but I find that I don’t open it all that often (maybe I’m just a neglectful follower… oops). I view it as more of a safety net rather than a way to watch and judge the numbers her Dexcom is spitting out. Basically what I’m saying is that maybe what you perceive as public failures via the cloud are not seen as such by your caring followers. We’re not all out there judging from behind our iPhones 🙂 And remember, we do so much shit to manage diabetes every day and generally do a damn good job!

I was notified that since we purchased our G4 between March and December of last year we are eligible for an upgrade to the Share version for $199. My problem is that I do not have an iPhone, nor can I afford and iPhone and plan. Do you know if/when they will come out with an Android option? I’d take them up on the upgrade offer if I knew I could use it on my phone.

Jennifer – I talked to a Dexcom Rep at the Walk last weekend. They are working on Android OS – it’s a matter of getting it past the regulation cops. Since Android is an “open” OS it’s theoretically more open to hacking, etc so it takes more to get it approved. I’m in the same boat you are unfortunately. No Apple phones in my family.

Kerri, I wonder how much of this is also from the fact that you’re among the first generation of “sharers”? I wonder how people will react, and develop a dialogue about sharing, as this generation and the next generation of sharers get on board. Maybe Dexcom could have a yearly sharer’s conference/symposium to discuss things like this. Maybe I’m overthinking.

I can totally see how this kind of thing can screw with your psyche. In the end, more data is better than less data. But it’s still just data. Thanks.

As a mom of a T1 kiddo I LOVE the Dexcom
Share! It’s just the peace of mind I needed, but I’m so so thankful for your article, because my teenage (14) daughter hates the fact that her dad and I have constant access to her #’s. I get it! Maybe I didn’t before, but I feel like I need to ease up a bit on her! (It’s just that we worry and want what’s best, and puberty is doing a number on her diabetes…,) I can only imagine if the tables were turned, and I guess I need to put myself in her shoes, so thank you!!!!!

My new Endo is going to let me trial the Share later this week. I’ve never work a Dex before, only the Medtronic CGM. If all goes well and I like it, I’ll switch over to it. My hubby travels a lot and since I’m home with the boys I want someone else to be able to get an alarm and another close friend has offered to get the alarms – she is also going with me when I travel out of the country this summer. So since we will be walking from sun up/down pretty much, she can get an alarm and tell me to stop and drink juice if I need it. We’ll see how intrusive this becomes 😉

Very well-timed post for me! I just did the $199 receiver upgrade today. I had a terrifying low in the middle of the night, two nights ago. I was alone and slept through my Dexcom alarm apparently for some time, since it just said LOW and the meter said 23. I have only the faintest memory of what I ate or what I did. My idea is that I will only use it overnight, follow myself on my own iPhone – since the alarm options seem more robust – and have a trusted friend monitor overnight for hypo under 50. Between my own Dex, my phone and HIS phone….everything should be fine. I’ve recovered physically from being hit by a metaphorical truck, but emotionally this one has been tough. Thanks for posting your thoughts!

I am going though a crazy blood sugar spike right now due to viral infection, and reading your article was more reassuring than I can describe–knowing I am not alone as I do my best on all fronts and still have feelings of shame and low self worth when the number go “their own way.”

Thank you!

I am going to see an endocrinologist next to week to get my prescription for a Dexcom. If there is any way I ever return the favor for what you so generously give, I’m ready and willing.
Ahnalira

I just wanted to leave a comment and say that that last sentence you wrote really hit home for me. It basically sums up my biggest issue with this disease: Judging myself and never feeling good enough.

YES. I so agree with pretty much everything you have said about the Share system. I too find data sharing very personal, and it has been revealing to me to realize how much I don’t like someone else seeing my long-lasting highs or crashing lows. Even though I know in my head that they are not shaking their fingers at me saying ‘tsk, tsk,’, I still feel a heightened level of accountability. Maybe that’s not a bad thing. I do like the feeling that someone will text me with ‘Eat something!’ though. I don’t feel so lonely dealing with a low. Misery loves company.

Hi – great post as usual Kerri! I just got the Share and am Following myself too. I was wondering if you or any other readers have figured out how to see your numbers more quickly on the iPhone? I was hoping to see the number on my iPhone’s lock screen so I don’t have to open the Follow app every time I want to check my blood sugar number. Please let me know. Thanks!

I am very out of the loop – all this technology is way beyond my resources. But I just read a friend’s experience with the Share and she commented that she finds it helps others understand what her daily focus on d is like – we often do it so quietly and seamlessly that people around us don’t pick up on the constant nature of diabetes management. And that made me think that this would be the best way so far of getting people with functioning pancreases to ‘get’ diabetes. Instead of the “I know diabetes, I pricked my finger and tested 3 times today and took a saline shot” we could beam data to someone and make them act accordingly. Share a ‘low’ and the person has to stop what they are doing, drink juice, and sit out of life for 15 minutes. Share a ‘high’ and the person has to leave their desk/presentation/car and go find a bathroom. Could be powerful stuff!

“I want to let my blood sugars stutter and splutter without scrutiny. I want to fail, or do what I perceive as failing, in private.”

I think this summarizes my thoughts on Sharing perfectly. If I’m driving and accidentally run a stop sign, I’ll get nervous and glance in my rear-view mirror, hoping to not see red and blue flashing lights behind me. Then I’ll feel relieved that I didn’t get caught, despite still feeling guilty for doing something wrong. If I share my CGM data, there is no more possibility of “getting away with it.” Those flashing lights will always be following me, making me paranoid and uncomfortable. I think we need the ability and the possibility of getting away with things every now and then — for our sanity.

We started with the share 2 weeks ago with my daughter. Overall it’s been good, we have had times when it stops reading and we are just sitting around. Also the alarm selection could definitely be better, I think they need to work on that. At least offer one less annoying sound.

Excellent post. I’m more sold on it now that there is a bluetooth option. I wanted her to go into the world and learn to be responsible without being able to see her numbers and seem to be looking over her shoulder, but now summer is coming, and along with that comes her first ever amusement park platinum pass. What to do…

[…] about us getting on her back about her numbers. I assured her that ANYONE young like her, or a little older than young, are also worried about people getting on their case about numbers, but having someone you trust […]

[…] the night because I was paranoid about experiencing that hypo intensity again. I decided to share my Dexcom information, usually shared only with my husband and a trusted friend, with my best friend for the duration of […]

[…] How the alarm didn’t wake up my daughter (clad in Captain American pajamas and asleep in my bed because Chris was out of town last night) is beyond me. How it didn’t wake me up the first few times it went off is beyond me as well, since I was low for about 35 minutes before actually acknowledging it. A text message from my husband, asking “Are you awake and drinking juice?” grabbed me from the fog. (Thank you, Dexcom Share, for making the “Big Brother” moments worth the moments when I need a hand.) […]

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NONE of the information on this site is medical advice. None. If you are thinking about making changes in your diabetes care, talk with your doctor. Don’t take advice from people on the Internet as “medical advice.” I am not a doctor. I can’t even drive stick.